Here’s another update on the various medical fronts. I’ve had a couple of people tell me these missives are useful for friends and family who might be dealing with similar issues. That means so much to me! There’s a lot going on and some good news for a change. I am just going to bring this up to speed – for background info, please read previous posts.
I had a three week hiatus from test results which was DELIGHTFUL. Getting lab results back is quite stressful so simply having a break from that process was wonderful. I also did not change any medication doses for about five weeks – the longest stretch since surgery. I had a lot of blood work done on September 21st, so much of this information is from then.
Thyroid levels. My TSH came back at 1.94, drum roll please, NORMAL RANGE! WOOT WOOT! That’s my first normal TSH since surgery. My energy level has been good and I have been feeling “normal” so I wasn’t surprised, but it sure was nice to see this one. I would also say, normal isn’t necessarily “optimal” but it’s getting closer. My endocrinologist and I would both like that TSH number to come down a bit, at least under 1.5 and maybe closer to 1.0. But we decided to let this situation ride for awhile and did not change the levothyroxine dose.
Calcium levels. This is the big one because low calcium is the one piece of all this that can actually be quite dangerous. Calcium was 8.7 on September 21st and we decided we can start backing off on some of the supplements. YAY! The high level of calcium supplementation is something I find quite concerning. High calcium levels can cause all sorts of problems. Also, high calcium levels can suppress the parathyroids, the poor little glands I am desperate to have working again. We are trying to keep calcium high enough that I am symptom free and safe, but low enough that the parathyroids get the message that they need to kick into gear. We calcium at 8.7, we could start backing off the supplements. YAY YAY YAY! I have gone from taking three Tums a day to taking only one Tums a day. We plan to try dropping the last Tums next week.
Dropping the Tums is great in lots of ways. I’ve gone from 10 pills a day to “only” 8 pills a day. I’ve gone from taking meds at four different times a day to “only” three different times a day. Best of all, when we get rid of that last Tums, we can start dropping Calcitriol. Calcitriol is the prescription strength vitamin D that does seem to suppress the parathyroids. Maybe. There is some debate on that, but I want the Calcitriol out of my life, ASAP.
In addition to the standard 10 pills a day, I had also been taking Tums on an as needed basis while running. I am very happy to report that I have not needed Tums while running in about two weeks! It’s MUCH nicer not to have to stop every couple of miles to eat a Tums, believe me.
One last sort of amusing calcium note – yes, we are in the realm of calcium amusement, better than calcium despair, trust me. Last weekend I ran 16 very solid miles. I am still taking Tums on long runs because they are so taxing on the body and I ended up taking four Tums over the course of the run. I went directly to the lab for a blood draw to see how this regimen was working. Calcium was 9.7! I don’t need it anything like that high so I can clearly scale back on long runs as well.
Good news on thyroid levels and good news on calcium and MORE good news on my voice. The voice therapy sessions are great, but very hard to book. I had one in late August and one on September 30th – once a month just is not a great way to approach recovery. However, it was clear to me that my voice is becoming stronger. In August we were able to measure an increase of 8 decibels! We didn’t measure volume on September 30th, but we did start to work on pitch. I saw a new therapist who told me he is very optimistic that I will get my full voice back. The fact that I can make high-pitched squeaks is apparently an indication that the vocal cords are starting to stretch and just need more squawking and more stretching. I am starting to be able to sing passably as long as the song has a very narrow range. The loss of the ability to sing has been more painful than I could have imagined. I will be so grateful to get my voice back.
Last and in fact least, we have that pesky little basal cell carcinoma issue, aka fancy words for skin cancer. There are two ways to get rid of this thing, superficial radiation therapy and Mohs surgery. I have met with the two different doctors who would do each procedure. I’m waiting to hear about insurance coverage. I’m considering the pros and cons of each choice. Sometimes I am very very angry that in addition to my adventures in thyroid-land, I now get to choose between radiation burns and another cutting open of my neck. Both are shitty options. On the other hand, I am pretty sure that either choice will get rid of the skin cancer.
Thyroid surgery and its aftermath have turned out to be much more difficult than I expected. The mental toll and the sheer amount of time involved in managing appointments are the aspects that have been the most difficult. Just in the last few weeks I have started to feel like things are turning a corner, but the last four months have been so hard that it’s hard to trust this feeling. There’s still a long road ahead and the calcium issue remains the most worrisome. The potential long-term implications are truly scary so I am raising a glass to every Tums not needed. Luckily I’ve been able to work and run and bake so my life is full of good things alongside the medical nonsense.